Post-Treatment > Post-Treatment

Cognitive Dysfunction

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deb s:
I am now 5 years past my AN surgery, and I'd like to offer some practical tips on coping with the very real problem of cognitive dysfunction related to AN tumor. First of all, I'm an RN who also has a strong background in psych and  the developmental sciences. So,all that knowledge, I'm afraid , was pretty much to my disadvantage in the beginning, because I knew all too well what was happening to me. The problem was trying to convince my world-reknowned physicians of the reality of my problems and that I needed help - they seemed unaware that my symptoms were related at all to my surgery.  In fact, when I explained that I was having "cognitive problems", the surgeon said he could refer me to a good psychiatrist who could provide me with cognitive therapy.  That is a term for treatment used for depression, not what is needed for the neurological problem of cognitive dysfunction, which is memory loss, problems in math, reading, spatial functioning, fatigue, etc.  Apparently from what I have read, it is not widely known that that cognitive dysfunction can be a possible problem from AN tumor.  My tumor was relatively small (1 cm), right side, middle fossa microsurgery 8 hours with no complications, but with total hearing loss, and 6 weeks of total facial paralysis. The paralysis has improved greatly, but vestibular function remains a major problem.
SO, it takes major concentration on my part to keep my balance, hear, remember things, read things much more complicated than the newspaper, and when I get tired I "can't find my words". Immediately after the surgery the first thing I noticed was that  I couldn't add and subtract in my head anymore.  When I returned to work I found myself unable to "keep all  eight balls juggled in the air" like I used to do, even though I'd go home and go directly to bed for the rest of the day.  After two years I finally had to give up my career of thirty years and take early retirement despite my best efforts.  Since my retirement I have been able to spend more time on my medical care and have found out a few things that were not provided by my AN Physicians:

1)  See a Neuropsychologist.
     Your symptoms can actually be measured, documented, and treated.  Treatment can consist of many modalities, including occupaional therapy, or medical treatment (I was started on one of the alzeimers drugs by a neurologist, which made a tremendous difference).  Measuring and documenting your symptoms is important, not just for your sanity, but also because it can qualify you for eligibility for Social Security Disibility if needed.

2)  See a Neurologist (Not a Neurosurgeon).
     When I referred myself to a Brain Tumor Center neurologist, my evaluation revealed that I was having seizures.  The kind I was having are called simple- partial seizures, which caused me to have tiny twitches of my hands and feet, barely noticeable, usually when I was really tired. But they're there ALL the time according to my EEG testing, and enough to cause memory problems and fatigue. Perhaps the seizues were from the long surgery or retraction of the brain tissue.  But treatment made a big difference in my memory and attention difficulties.

3)  Deal with your Hearing loss
     I know this is easier said than done. But, if at all possible, and at ANY cost, if you are a high functioning, active working person, who is out there in the world with people every day, if you have completely lost hearing, consider getting a BAHA.  Helen Keller said that to lose sight was to lose touch with THINGS, but that to lose hearing was to lose touch with PEOPLE.  The most common coping skill used for dealing with hearing loss is social isolation.  And I believe one of the biggest causes of the fatigue after AN treatment is just the effort it takes in trying to hear. And you can feel exhaustion and depression when you begin to lose contact with friends, family and coworkers due to your hearing loss.

4)  For Newly Diagnosed AN's
     Know that cognitive dysfunction is by no means a common post treatment problem, but that for some reason, it is not widely known or accepted by some physicians as one.  It is important that you seek an AN Physician that offers not only excellent treatment for the tumor, but also for the possible complications that may follow.

ppearl214:
Deb, thank you.  What a marvelous post and I truly appreciate the time and energy you put into compiling it.  VERY informative.

For those attending the Symposium, it will also be discussed at workshops:

http://www.anausa.org/symposium_workshops.html


I will take Deb's info with me to the symposium and ask some of the professionals that will be there about their take on it as well.

Deb, great job! Thank you!
Phyl

Windsong:
Thank you deb s for outlining that succinctly.

I have raised the cognitive issues with one of my docs who did mention they could send me for testing etc.

I first noticed the changes you mentioned after a virus that strongly affected my vestibular system. One of the tests at the time was to measure the vestibular loss and one had me counting backwards and i noticed that I couldn't rattle the numbers off like i would have been able to. I could not quickly name vegetables lol. I actually had to first picture the number, then recite it. Same with the vegetables. It was weird.

Now after the An and treatment I am experiencing much of what you said here. Being tired compounds the problem. And yes, hearing difficulties do tend to make one avoid the situations that make hearing difficult.

Interesting what Helen keller said.

I will find out more about what they can offer soon. And am dealing with the hearing right now....

Thanks.

W.

linnilue:
Wow...what a wonderful disclosure.  It is so important for all of us to be very aware of the symptoms that others experience and the treatment options that are available.  It is also very true, and sadly so that the doctors who treat an's do not have very good follow-up care nor do they have the knowledge and experience with all of the complications.  And more often than not, we are told "it's all in your head"  lol, and send you off to a shrink because they are not at all familiar with the complexity of post care symptomotology.  I was told at one time that I had "anxiety" and my symptoms were not real.  However, never leave a stone unturned.  I went to Boston and met Dr. McKenna and Dr. Lewis and was told that my symptoms were very real, they had seen them before and that my doctors were not being honest with me because my symptoms were due to radiation damage.  It is very frustrating when you know for sure that you are not "normal" but you begin to feel crazy when your doctors deny your issues.  I have wierd twitches, cognitive dysfunction, short term memory loss, severe fatigue, etc. etc. every day but now I know that they are real because I was validated.  So I no longer expose myelf to the doctors whom I trusted at once and live my life as a free agent.  I now only trust those who are familiar with my history and acknowledge my trauma from radiation damage.  I too am a nurse and am 2 1/2 years post linac and my life is still difficult but getting better.  That said , any type of stress or trauma will increase my symptoms tenfold.  So I msut be vigilant and careful with my life.  I try not to overdue and live my life the best I can.  It could be worse.  i have learned to accept this challenge and enjoy what I have and not the "have not."

Gennysmom:
Great post!  I was just having a discussion with my ENT about this...and the differences in everyone's experience coupled with their psychological ability to cope not just with the AN, but the fallout afterwards.  I feel extremely lucky that I am working with doctors that have yet to question my experience, or make me feel like I'm making things up.  My doctor always inquires not to just the physical aspects of my recovery, but the cognitive and psychological ones as well.  His brother-in-law had an AN, so that may make him more sympathetic to these issues.  I'm glad you brought out the differences between a Psychologist and a Neuropsychologist.  I just don't understand how some doctors don't seem to be able to discern the difference between symptoms related to coping and organic dysfunction.  The brain is an amazing organ and you can't just brush off symptoms as non-organic. 

As well, dealing with the cognitive stuff, loss of hearing, tinnitus, etc, is a HUGE task to ask of someone, and you should not have to do it alone or without support.  You can't just "ignore it", you need to learn new coping skills that don't always come naturally.  This board and my AN friends have been a godsend for this....and the doctors advise people to stay away from the scary stories here!!!!  If they only knew....
 

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